Stephanie passed away this morning.
In an email from her husband, Frank, I learned that I’d lost my dear friend of two decades.
Stephanie was only forty-two. An administrator at a local bank, she was also a devoted wife and the loving mother of three daughters.
As a cancer doctor, I’m no stranger to asking patients with a life-threatening malignancy about their wishes. My question generally goes something like this: “Going forward, do you want to pursue intensive treatment, or forgo it in favor of enjoying the time that remains to you, with relief for your symptoms as needed?”
Asking this question is an intrinsic part of my job. But when I found myself having to ask it of a family member, I felt shaken. This was different.
The year 2020 was a lot of things for a lot of people. Chaotic, exhausting, heartbreaking, hopeful. It was a year in which my immense privilege—as a healthy, educated white woman—protected me from much of the pain born by others.
And while it was many of those things (especially chaotic) for me, it was also the year I started medical school. The year I moved from LA to Austin, driving across California, Utah and Texas in the process. The year I read fifty-four fiction books to escape the monotony of lockdown.
And it was the year my dad died.
In the first months of medical school, we’re taught that patient autonomy should be one of a physician’s guiding tenets. The doctor provides diagnoses, prognoses and treatment plans, but ultimately it’s up to patients to make decisions about their own care.
As a family doctor, I often tell patients: “Only you can know what the right decision is for you. I’m here to provide information and recommendations and then to support your decision.”
But over the past year, as my father’s memory deteriorated and his life drew to a close, I learned about the ways in which our medical system limits patient autonomy.
During his last months, my father said repeatedly, “My brain is in chaos.”
Malcolm sat in the ICU bed, propped up on pillows to ease his breathing. At seventy-five, he had suffered respiratory complications after open-heart surgery. He’d been on a ventilator for several weeks before gradually being weaned from it.
Malcolm’s blue golf cap hid a bald pate surrounded by a fringe of silver hair. He always seemed to be smiling, comfortable with himself and what life had thrown his way. His smile had grown even warmer over the past weeks as we’d gradually formed a bond of intimacy.
During the early months of the COVID pandemic, the Utah medical school where I teach asked me to facilitate a small group of first-year students in Layers of Medicine—a course that covers what you might call the “messy” side of medicine, including end-of-life discussions.
Just after the course started, my dad was diagnosed with pancreatic cancer. All at once, I felt my personal and professional responsibilities intersect, unexpectedly and powerfully.
“Nothing in life is certain except death and taxes!” my dad often crows.
This phrase takes me back to my boyhood, watching the Cricket World Cup matches with him. Time and again, I would pray fervently for an Indian win, but watch in increasing desperation as India threw away an insurmountable lead and snatched defeat from the jaws of victory.
B546 wants to die
eight years after they saved her.
Cervical-cord injuries are cruel.
For Maria it was a gunshot,
but it could have been a car wreck, a fall,
or a drunken misstep off a roof.
The reasons seemed to matter; now they don’t.
Thirty-two, alone, paralyzed, on a vent,
she mouths “no” to the antibiotics, the heart meds.
“I want to die,” she shouts in a whisper.
Zachary Reese ~
“Does a rock float on water?” I asked the haggard woman lying in the ICU bed.
I was an intern, in the first rotation of my medical residency, and Mrs. Jones had been my ICU team’s patient for the past week. Over that time, she’d looked more and more uncomfortable, constantly gesturing for her breathing tube to be removed.
Mrs. Jones tried to form words in response to my question, but the plastic tube in her mouth prevented it. Her chest rose and fell in rhythm with the ventilator’s hiss as the machine pumped air into her lungs; her muscles were too weak to do the work themselves.
After several attempts at speaking, she gave up
Startled out of sleep, I reflexively reach for my beeping pager. For a split second, I lie poised between wakefulness and terror in the pitch-dark resident call room, not sure where I am or what happened. I resolve to sleep with the lights on from now on.
I dial the call-back number.
“Pod A,” a caffeinated voice chirps. It’s Candice, one of the nurses.
“Hi. Amy here, returning a page,” I murmur.
“Oh, hi, Dr. Cowan,” she says. “I just wanted to let you know that the family is all here. They’re ready for the meeting.”
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